Turner Syndrome Support Group
Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births. Instead of the normal XX sex chromosomes for a female, only one X chromosome is present and fully functional. In Turner syndrome, female sexual characteristics are present but underdeveloped.
kimmberz826
So I am 23 years old, 24 in a couple months and I have mosaic turner's syndrome. I got diagnosed when I was 16. Lately I cannot help but feel the need to share my story and to hear other stories. Turner's syndrome as we all know is a rare condition ( disease just didn't sound right to me) and every time it pops up at work, I am a labor and delivery nurse, I feel excited that there are other people, that I'm not the only one and this made me want to talk to other women with turner's syndrome and hear their stories. Like I said I was diagnosed when I was 16. What started out as a routine physical at my doctor changed my life. You see I was also born a couple months early so I always attributed my shortness to that, and with my mom being only 5'3" I assumed I had gotten the short gene from her. Fast forward to a trip to a pediatric endocrinologist, blood tests and there I was sitting in a room with my parents being told I have turner's syndrome. Something I had never even heard of. So began the process of nightly growth hormone injections, more tests and eventually getting to the point I am today, taking provera 10 days out of the month and vivelle dot estrogen patches twice a week, most of you know the drill I'm sure. Now being 16 when I was diagnosed I'm not gonna lie I felt like a freak. I was embarrassed, you see I was shy to begin with not to mention I had self esteem issues and an eating disorder through high school as well. I never saw myself as pretty. I mean what person would be interested in a short girl with no boobs? I didn't tell my friends anything. I didn't want anyone to know that something was different about me, that to me I felt messed up. That I couldn't have kids. I was scared about the growth hormone injections not being a big fan of needles at the time, I was upset about not being able to have children of my own even though I loved kids and always thought of myself as being a mom someday. My family was supportive but I still felt alone. Fast forward some more and here I am. I graduated with my bachelors in nursing degree 2 years ago and have been a maternity nurse for a year now and while it has its ups and downs I love it. I feel like I am in a good place mentally and physically and another little tidbit about me, telling the person I want to spend the rest of my life with was probably the scariest and hardest things I've ever done. But it was also one of the best. She.. yes she...is my best friend and soulmate and she has been so supportive and never once got freaked out or treated me any differently. In fact she considers it a blessing. And that is my story. Thank you for listening :)
Butterfly85
Thank you for sharing your story! Welcome and big hugs, well done for giving back so much, on your job-it is truly admirable. :)
whittywords
I so related to your story, I have mosaic Turner's too and went through nearly everything you described. Always good to know we're not alone.
deleted_user
I am close to your age and went through a similar experience. My plan for my life always included being a mom, it was certainly hard to hear that it wouldn't happen the way I thought it would be. I don't know anyone that has Turner Syndrome as well and it's very lonely when nobody knows exactly what you're struggling with. If you need to talk to, I'm here.
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